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The Trajectory

By Adrienne, on April 17th, 2014

When you take a baby or child to the doctor, that doctor looks at your child in light of whatever you, the parent, claim as the problem. The doctor a) dismisses you with admonishments to relax; b) makes a diagnosis and treats your child; or c) refers you to a specialist.

You, the parent, will a) accept your admonishment and watchfully wait while trying to relax; b) go to another doctor; c) administer the prescribed treatment; d) see the specialist; or e) some combination of the above.

When you see the specialist, that doctor will look at your child in light of whatever you, the parent, claim as the problem, plus whatever his or her specialty is, plus whatever notes she or he has received from the referring physician.

Meanwhile, your child has whatever problem your child has, and if that child has a complex problem, you may or may not be highlighting the right symptoms, and you may or may not be seeing the right doctors, and you may or may not be administering the right treatments. If the problems your child has are not the kind that can be easily measured, you may feel like you’re throwing money, time, and drugs at the problem, fingers crossed.

It doesn’t feel particularly scientific, in spite of the prominently displayed and very impressive degrees covering one wall of every office you visit. It feels a little like faith, and you may think, I already have a pastor and a God; what I really need here for my child is evidence-based everything.

And of course you’ve chosen carefully, and it’s all evidence-based and those degrees represent years of education and training. These people know their stuff and they’re delivering the best care.

Except it’s all based on what you, the parent, claimed (way back then, in the beginning) as the problem, which set you all (the child, the parents, the doctors and therapists and teachers) on a trajectory. The doctors are not puppets; they see your child. They assess and draw their own conclusions and make diagnoses of their own.

Except you will always be the person who identified point A, and what if you chose the wrong point A? Or the point A that was only partly correct? Or what if you identified 3, or nine, or thirty point As, and the doctor du jour chose what he or she saw as the most salient (interesting, urgent, plausible, treatable) point A and the rest of it got filed away for later and in the rush and press of appointments, treatments, and life, you got tired and started following doctors instead of collaborating with them?

What if, in a moment of clarity and energy, you identified some lost point As and asked for the tests to investigate them?

And what if, when those tests came back, you saw, in black words on white paper, a problem that, had you highlighted it from the beginning, might have made everything very different?

It is possible that, on reading such a report, you might write some words in second person (even though you hate when people write in second person) because you need some distance from the enormous potential reality the report represents. It is also possible that you have such a mingled mash of thoughts and feelings that you have yet to make sense of them, even two months after you first read the report.

When you take a child to the doctor, you are a fallible human presenting a fallible human to a fallible human. And doesn’t that just suck sometimes.

8 comments to The Trajectory

Just take care, that’s all.Thoughts,prayers and sympathies from th UK.We’re only parents not omniscient & we do what we can do-hope you can get some distance & ability to deal with this bit of the journey.

I had a child who when young had special needs. They said, “You asked for it.”

I had a child commit suicide. My “friends” ran from me like I had the plague that could affect their children.

I adopted an older child who was incredible, but the school didn’t think that. He was the only child sent to in school suspension who had not committed a violent offense. They said, “You are such an angel to take him in.” He is one of the reasons the other one committed suicide.

I took in a woman who is 6 years older than I am and is bedbound. “You are such an angel. I couldn’t do it.”

I ran from my alcoholic husband who wanted me to always look like a very young model of the pornographic image even though I turned into a traditionally shaped woman. He said, “You look like a beached whale.” Others were so shocked when I left that again they ran away.

I have fibromyalgia. Doctors only look at one symptom, not a complex set. I didn’t get diagnosed until I was in my late 40s. If I didn’t tell the doctors what was wrong with my children, they would never have guessed. And yes, I got it wrong a lot of times; therefore, so did the doctors.

I am much older than you are. I don’t usually talk about these things because I can’t even share them in the 2nd person.

whatever it is, you know it now, and can act on it, or process it, or confront it when you are ready. Perhaps things would have been different if… but that, of course is always the case. You were persistent enough to look for other “point A’s”, and that takes a huge amount of courage, to be able to go back to the beginning and start over! You should be proud that you didn’t just stop thinking about alternate paths/ways/ causes/ solutions/ anything. Now you have new knowledge that might have never come to the fore, and that is good.

I have an if-only in my past too. I took a doctor’s word for something rather than pushing for more testing, because when you’re the parent of a medically complicated child it’s really really hard to know when to push and when not. I chose not, at the worst possible moment (so far!). I’m not going to tell you not to blame yourself and that it’s not your fault, because if you’re anything like me, those words are true but utterly beside the point. I will just say this. We have the ability as humans to identify the ways our actions might affect the future, which is obviously a useful skill. However, because we have excellent memories and imaginations, sometimes we use this ability as if the past were the future, as if we could still change our actions and change the future. We can’t. It’s a confusion of memory and projection and it’s just an unfortunate side effect of how smart we are. If the potential future you’re contemplating at is actually *in* the future, go to it, but if it’s an imaginary one, your brain is just trying, with all the best intentions in the world, to mess with you. Try to keep your inner eye focused on the real future, not the fake one.

Please stop self-mutilating. I play this role, also, to my sad detriment, spiraling down into black depression and white fear and red hate. I rail against a fate that I did not and could not control and which maimed my beloved son. I reel away from thinking about this, even a sideways view causes searing pain. I understand the great wrath of the Greek tragedies. Over the years it has gotten better, but not much. As usual, I sum it up too patly but truly: life is not fair.
No solace, sorry, but much support and some understanding.
Love, Stephanie